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Capturing RARE Youth Voices Survey Results

Updated: Apr 16, 2021

Between August and September RARE Youth Revolution, in collaboration with TREND Community, ran a survey with the hopes of collecting information to further aid research into rare diseases, and to find out how young people with rare diseases are expressing themselves and connecting with peers online.

TREND Community CEO Maria Picone was quoted as saying:

"TREND partnered with Rare Revolution in an effort to understand where young people are spending their time online so we can share their stories and make their voices heard."

Participants of the survey were asked the following two questions.

1. Which Social media platforms do you use most to learn and converse about your condition?

2. Which social media platforms do you use to interact with others living with rare disease?

To answer each question, participants were given a choice of 14 options to select: Facebook, Facebook Messenger, Twitter, Instagram, Blogs, TikTok, Snapchat, Reddit, Pinterest, YouTube, Tumblr, WhatsApp, other, or none.

In this blog post, we’re going to break down the findings, and tell you how the information we have collected relates to you. To make it easier, the data has been separated into 4 age groups.


The Under 13’s only made up 10.75% of the survey participants, with 9 people of that age taking part.

The most popular social media platforms for the under 13’s are Instagram and Facebook. Participants said that these platforms are where they are choosing to interact with other individuals with rare diseases.

However, when it comes to learning about their condition, it seems that the majority of those in the Under 13’s category are not using social media for this purpose, but those few who do, are using Facebook and Instagram.

Children in this age group are less likely to be engaging online, as their parents will often be doing it on their behalf. So while they may be using it to connect with friends, at this age, this isn't where this age group are looking for answers or information.


The 13-17 age group, like the under 13’s, consisted of 9 participants.

Again like the under 13’s, the 13-17s’ preferred method of communicating with each other is through Instagram or Facebook, and they do not tend to use social media to learn and converse about their condition.

Nobody in this category reported that they used Twitter, Tik Tok, Snapchat, Reddit or Tumblr for either purpose.


18-24 year olds made up 27.96% of the participants.

While the people in this category use a more varied selection of platforms, such as Twitter and Snapchat, they still predominately use the same two platforms as the younger age groups, Instagram and Facebook.

This age group were the first to report that more people used social media to learn and converse about rare diseases than didn’t, showing an interest in looking to social media as an information source and not just personal connections The predominant platforms again were Facebook and Instagram, followed closely by the video sharing platform YouTube.


The 25 and overs make up the vast majority of participants, 50.54% to be exact.

As you may expect with a higher number of participants, the results were more varied than the other age groups. However, despite this increased variety, the leading platforms remain the same, Facebook and Instagram.

This age group, interestingly, was the only group to report that they interacted with others through blogs. This could suggest that the 25 and overs are more open to or interested in reading longer, more time-involved articles, whereas the younger groups prefer shorter and more easily digestible social media posts.


Whilst every age group reported heavy use of Facebook, very few participants reported using Facebook Messenger for either purpose. One conclusion we may be able to draw from this, is that it may appear to be less important for young people with rare diseases to talk one-on-one, instead focus seems to be on larger group discussions. This could also be based on individuals internet safety practices at this age, limiting contact with others online in this way.

The results from all the age categories seem to suggest using social media to learn about their conditions from online information sources is not a main priority. Their main focus is to engage with other people with rare diseases that they can relate to.

More information on the Capturing RARE Youth Voices can be found on our RARE Youth Resources page here

More can be found out about TREND Community on their website here

To get involved please contact our youth coordinator James Brooks on


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